Saturday, December 31, 2011

Hopes for the new year

This year has brought two very awesome things to us...Micah and I finally got married and we had our sweet baby Judah. It's weird how fast this year went by, I spent the better part of it pregnant and though that seems to have dragged on forever, it is such a distant memory now that Judah is here.
2012 will bring a lot of challenges our way. Judah will have his first of many surgeries and I am starting to dread the first one so much. We are still awaiting a call from Atlanta with the date. Things will be rough for a while but I am so thankful that we have so many family members and friends (and some people we don't even know) that are rallying around us and praying for us and Judah. I hope that Judah is strong and handles everything well....even more, I hope that WE are able to handle it. I hope that he heals and recovers quickly and that there are no complications. I hope that our family is happy and healthy and will continue to be for a very long time.
It's funny, I've read a lot of facebook posts tonight that say "Aw, I wish I was going out" etc. but I can't tell you how happy I am to be staying at home (with a couple glasses of wine, of course ;] ) with my two boys.. I love them more than anything in this world.

Wednesday, December 14, 2011

Making an impression

Today we went up to Atlanta to make Judah's impression for the Latham wasn't too bad but was hard because I had to hold him down while they put the tray with putty in his mouth. It seemed like it took forever, and he cried a lot but I am thankful he didn't struggle because that would have hurt me a lot more. The doctor said it will take about 2-3 weeks for the lab to make the device...and in the meantime the schedule coordinator will be working out when the surgeon and OR and all the other things will coincide for his lip surgery. Once they get that date set they will back up four weeks and that is when they will do surgery to put the Latham in place. They said he will have to stay in the hospital overnight after that surgery for observation since they will be putting him to sleep...I've also heard from other Latham mom's that they have feeding difficulties afterwards and often have to change bottles so I'm glad we'll have resources to help us immediately afterwards. Once the Latham is put in we will have to go up to Atlanta every week to have them check the progress. We also still have to see the ENT doctors for his tubes and see their hospital pediatrician for them to do a pre-op physical.

I am having a hard time mainly because everything is still up in the air. It's almost like before he was born and we didn't know anything, but now we just don't know when anything will happen. I am stressing out about whether to go back to work because I don't know how we'll make ends meet otherwise...but then again there aren't any viable childcare options other than shuffling him to Ft. Mitchell to stay with my mom...but that would involve me driving there, then to Columbus for work, then back there to get him and then home. Micah is trying so hard to get a better job and hasn't heard anything from anyone. I just feel like time is running out and I can't seem to find a way to make things work out the way I need them to. As stressful as all this is I can't imagine being able to function at work...I can barely function in my daily life. Today was just very trying in a lot of ways...I hate being at doctor's offices and I dread all the upcoming time we will have to spend in them. I hate that my sweet baby has to have all this done and wish we could just worry about normal things like how many poopy diapers he has, rather than how many surgeries he has to have. I know it isn't productive to think about things these ways, but some days you just can't help it. I guess I'm having a "why us?" kind of day.

Wednesday, November 30, 2011

Here we go...

First off, I apologize for not posting for so long...Nothing new happened in the last few weeks before he was born and now that he is here I hardly have time to think about anything, much less write blog posts. But luckily, Judah is sitting in his bouncer quietly staring at me...he must know I am writing to let everyone that loves him know what went on today. =]

Our first appointment this morning was with genetics...She got some family history and asked us some questions and then poked and prodded Judah for a while, looking for signs of varying syndromes that are associated with clefts. Many times, a cleft is part of a larger syndrome, but thankfully Judah has nothing else going on. I think I held my breath the entire time she was checking him out, and when she said everything looks perfect it was such a relief! She told us since there is no history of clefts on either side of our family and since there is no other syndrome involved that if we had another child the chances if it having a cleft would be about 4%. To put that in perspective every woman has a 2-3% chance of a birth defect, so it's not that high.

 Next, we saw nutrition and feeding...they asked a lot of questions about how much and how often he is eating and watched him feed to make sure everything looks good. I could have told him he has NO problems with that!!

While we were talking with a social worker, the plastic surgeon came in. He asked me to lay Judah on the table and by the time I sat down he was already handing him back to me. He was in and out so fast I didn't even have time to form a question. He told us that Judah will be fitted for what is called a Latham Pin is basically an appliance that he will have a surgery to put in and we will have to turn a tiny screw on it every day to pull everything closer together for his lip repair. Once they are satisfied with the results they will schedule his lip repair and they will repair his nose, lip and gumline all at one time. He will also have tubes put in his ears, as babies with clefts are more likely to have ear infections, and they can cause hearing loss. We go on December 14th to make an impression for the device, but I don't know how long after that he will have surgery to put it in. I'm sure they'll give us more details then.

We also had a hearing test done because he failed his newborn screen... he passed his right ear on a second test, and failed the left. Today he failed both ears again because there is fluid in them. The test sends a vibration to the ear drum and measures it as it comes back, but because of the fluid the vibrations get lost in there and the machine receives no signal. Once his tubes are put in they will do another test. It makes me a little nervous just hearing that he is 'failing' hearing tests, but I know he can hear. He responds to us and startles at loud noises...if you walk up behind him and speak he will turn to see you. The technician doing the test likened it to how you can hear when you stick your fingers in your can still hear but things are muffled. I was a little upset in the office because it is just hard to hear things like that and you can't help but worry, but she told me not to as long as we feel he is responding well.

I am sitting here crying, thinking about his upcoming surgeries. It's so strange because I have been totally ok with everything about his cleft since he was born...he is so beautiful just the way he is. Now that we have spoken to the doctors and things are starting to happen I am so scared. My heart hurts so much thinking about everything he is going to go through. I know it is all for the best but thinking of my poor baby being put to sleep and cut up kills me.  I also have this weird fear that I won't like the way his surgery turns I am so in love with the way he looks now (and no, I'm not saying I 'don't want surgery', of course I know it is wonderful and necessary...and yes, I know he is in great hands). It's just a weird feeling I can't quite put into words.

Overall, today was a good day. We were there for almost six hours but we were in one room the whole time and everybody came in to see us one at a time. All the people we spoke to were so nice, caring and welcoming and that made everything so much easier. We will update you guys after our appointment in a couple of weeks!

Tuesday, September 6, 2011

Nothing new...

Sorry I haven't updated in a while, there just hasn't been any new developments lately. I passed my glucose test, so no gestational diabetes! We go to the fetal medicine specialists on the 15th to have him measured and see him again...I excited to see how much he has grown and how much he has changed since the last time we saw him in July. We have just been getting ready to move and preparing for Judah's arrival! My baby shower is on the 18th of this month and I am really excited for stuff is just so cute =] Judah moves around a LOT and has been sticking his feet up in my ribs lately...I can't wait until he is here so I can finally hold him! It's starting to freak us out a little to know that he will be here so soon. I am just getting over a cold, but other than that he and I are both doing fine... I will post pictures after the ultrasound next week!

Thursday, July 21, 2011

Facing reality

Today started off ok and ended a little hard. We went to the fetal medicine specialists this morning for another ultrasound to check on Judah's growth and see how he is progressing. He weighs approximately 2 pounds 4 ounces...but he is measuring about 2 weeks ahead of 'schedule' and apparently that is worrisome. I go for my glucose screening to check for gestational diabetes on the 4th of August and if that comes out abnormal then that could be the cause. Micah and a lot of babies born in his family have been big so they said maybe it just runs in the family...but it seems they are trying to find a more concrete thing to pin it on.
They got some pictures in 3D of his cleft for the first time today. When I saw it I didn't really have a reaction...I actually was kind of ok, but as the day went on I found myself getting a little down about it. I guess part of me held out hope that it was misdiagnosed and it would turn out that nothing was wrong at all. The reality of it really started to hit hard...Overall, I guess the appointment was nice and disappointing all at the same time. I attached the pictures to the end of the post...His umbilical cord was next to the right side of his face so it looks a little distorted over there and they said it made the quality of the images a little fuzzy...but you can make out the cleft in his lip on the left side. They still say it is unilateral but the doctor today said it does appear to be complete, meaning it goes all the way into the nose. They still don't know if he has cleft palate as well, and probably won't be able to tell until he is born.
Some good news is that he is turned head down so they said we probably won't have to worry about him being a breech baby!

Monday, June 20, 2011

Things are looking up

Today was a really good day! I told about 5 people at work about Judah and didn't cry. Normally, I can get out "He has..." before I choke, so hopefully this is a sign that I am coming around. At first I didn't think I would tell many people other than family and close friends, but I am starting to feel like I want to share. Looking back, I guess I felt ashamed in some way...and yes, I realize it is not my fault and I do not blame myself or Micah for any of this, but it felt like my pregnancy or Judah was devalued in some way. I was very worried about what other people would think about him but now I just feel like if you don't like it, then don't look. I didn't think I would want to take pictures of him and now I am kind of excited to plaster them all over the internet when he is born. I guess I realize now that he is worth just as much as any other child, if not more. I think it has helped to tell more people and hear how positive their reactions have been. I am still a little worried about the upcoming tests we have, I just want everything else to come back ok. I am going to just assume he has cleft palate as well, so then if he doesn't I will be pleasantly surprised, but I feel it is poisonous to 'hope' that he doesn't. I'd rather prepare myself now!

Also, I called the counselor at the Maternal Fetal Medicine Specialists. Our appointment for the echo cardiogram is next Wednesday, the 29th. Hopefully we will have all good news there...She said she has been playing phone tag with the cleft specialists in Atlanta. Hopefully they will set up something for us soon because I am anxious.

Hopefully this isn't a fluke and I will have lots more days like this one! =]

Friday, June 17, 2011

A different path

I am starting this blog at the insistence of my Aunt Debbie and my mother...I had intended to start a blog for Judah, but never got it off the ground. Now I have a different reason compelling me to write. Originally, when they told me I should 'write it out' I thought it would be a terrible idea for me to journal what I was feeling about Judah and his 'complications', but as the shock has worn off and the grief has turned to acceptance I have realized what good can come from venting and sharing and the feedback and love we can receive from that. And so begins our story...

We found out on June 10th during our 20-week anatomy scan that it appeared Judah has a cleft lip. I am thankful that I am married to Micah because he took the news as a minor roadblock, just one of those things that we will deal with and everything will be fine. I did not handle the news as well. I guess I went through a little period of mourning, grieving the loss of the vision I had for this pregnancy and his birth. I saw things playing out a certain way and it just won't be that way anymore. I will probably never be able to breastfeed him naturally. He will need multiple surgeries and care throughout his life to repair and correct everything. It just all seemed really overwhelming.

We had an appointment with a fetal medicine specialist on June 15th. After a very long ultrasound they concluded that he does indeed have a unilateral cleft, so luckily it is only on one side. It may be possible to have a 3-D ultrasound to see if he has cleft palate as well, but most likely we will have to wait until he is born. The ultrasound will only really show anything if Judah cooperates, and given his behavior and penchant for putting his hands over his face it will not pan out. =] A cleft sometimes throws up flags that there may be other abnormalities or problems, so although everything seems to be fine it is 'standard procedure' to check out his heart, since that is the next most likely problem that occurs with a cleft. All his ultrasounds show that his heart looks fine but we have an appointment soon for a fetal echo cardiogram to take a closer look. We also have an appointment with some cleft specialists in Atlanta to discuss the logistics of when surgery can be performed, what we can expect, etc.

I felt a lot better after seeing the specialists because they did a 3-D ultrasound on him so we really got to see his face. Although you cannot see the cleft on the ultrasound, you can see the rest of his face and he is adorable. I read today somewhere that the child will get a lot of his feelings about his cleft from the parents...that their view and outlook on it will kind of set the tone for the way he sees things, and that really made me think. Yes, it was very upsetting news, Yes, it will be really hard and things will be a lot different now, but he is still our baby. He already has so much personality and we love him so much already. I just hope that everyone can look past his physical anomaly and see the baby we see. We are already halfway through this pregnancy and we have just been taken down a different path, but that's ok. It will still be really hard sometimes, but I feel like I have come to terms with it a little better now and would be able to share. I hope you guys will follow my blog and come on this journey with us.